Project Summary
Background: People affected by MS want answers to many questions about the disease. Although the results of MS research studies are published in medical or scientific journals, people affected by MS do not regularly read those journals, and even if they do access research articles, the results are often not presented in ways that facilitate the use of the information in healthcare decision making. In addition, novel approaches (e.g., infographics, video abstracts) to improve the impact of research results on patient healthcare and health have seen little use in MS to date.
Proposed Solution to the Problem: This project will expand the capabilities of the iConquerMS People-Powered Research Network (PPRN) to establish an iConquerMS Research Results Dissemination Capacity for disseminating multiple sclerosis (MS) research results to MS stakeholders, especially people affected by MS, to increase their understanding of new evidence and to facilitate their use of the information in healthcare decisions. The focus for developing this new capacity will be the future results of ongoing PCORI-funded MS comparative clinical effectiveness research (CER) studies.
Overall Objective: Build the iConquerMS Research Results Dissemination Capacity, co-created with MS stakeholders, to disseminate MS research results through a variety of methods and channels tailored to the information needs and ways of gaining information of specific MS stakeholders, especially people affected by MS.
Activities: Form a multi-stakeholder Steering Committee to guide the project activities. Undertake a landscape analysis of dissemination methods and channels of other organizations. Create an iConquerMS website area for presenting research results in understandable, actionable, and impactful ways. Develop educational materials and approaches about research and recommendations on using reports, infographics, podcasts, webinars, or videos about research studies. Generate standardized resources that MS stakeholders can use in healthcare decision making. Establish methods for interviews in the iConquerMS Chat with Chat webinar series with study PIs and participants and for presentations and discussions of study results in RealTalk MS podcasts. Establish ways for highlighting study results on social media with links to additional information. Build upon collaborations already in place with MS Coalition member organizations and other MS communicators for broader dissemination of resources to the MS community.
Project Outcomes and Outputs: The short-term outcome, at the end of the project, will be a new and influential capacity for disseminating the results of MS research studies, validated using the published results of a PCORI-funded MS CER study. In the medium term, the iConquerMS Capacity will disseminate the results of PCORI-funded MS studies and other MS research. It is anticipated that, in the longer term, this Capacity will reinforce the position of iConquerMS as a trusted initiative which delivers value to people affected by MS and other MS stakeholders.
Patient and Stakeholder Engagement Plan: MS stakeholders will be engaged throughout the project period in a multistakeholder Dissemination Capacity Building Steering Committee (SC) to guide the design, development, and conduct of project activities; as responders to surveys designed to gather stakeholder perspectives and insights on the dissemination of research results; and as communicators about the research results dissemination capabilities of iConquerMS.
Project Collaborators: The project will be conducted in collaboration with Arizona State University’s Complex Adaptive Systems’ Computational Science and Informatics program, which is responsible for information technology aspects of the iConquerMS PPRN. In undertaking the project, the project team will expand the existing relationship with RealTalk MS, a podcast focused on the dissemination and sharing of MS research results hosted by project consultant Jon Strum, and with Dr. Surachat Ngorsuraches of Auburn University, who organizes and hosts the iConquerMS Chat with Chat webinar.